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Newb here, in desperate need of some advice. Honestly I’ve been at my wits end a few times lately and just reading others’ stories has helped me chill out and realize I’m not alone so I signed up to get some advice on my particular case. I’ll start at the beginning and give a summary to date. My apologies if it turns into a long post.
First off, 36 y.o. Male, in shape, before all of this I was working out daily, running, hiking, biking, lifting, etc.. about 3-4 years ago I noticed my energy level decreasing, but I figured hey I’m not as young as I used to be. Then about 2 years ago it got to the point that I mentioned it to my doctor. Did some blood work and everything came back normal so we decided to keep eye on any changes. Well from there it got worse fast. Extreme fatigue, headaches, visual disturbances, loss of balance and coordination, memory problems achy muscles. It got to the point that I couldn’t read or work out anymore or without feeling dizzy and exhausted. I probably delayed my diagnosis by a good 6-8 months because all of these other symptoms scared the crap out of me and caused me to downplay the fatigue and sleepiness. I think my doc had the right hunch early on, asked me if I had any problems sleeping well and as far as I knew I slept fine. Then he asked if I snore (he was on the right track). I said no, confirmed with my girlfriend who said besides a quick occasional snort, that I'm a silent sleeper.
Over the next few months I spent quite a bit of time and money ruling out this and that. 4 different kinds of allergy medicine followed by antibiotics and steroids to rule out infection or inflamation in sinuses or inner ear, opthamalogist checked eyes twice. MRI of brain. Physical therapy to try to "reset" my inner ear. Meclizine to try and reduce the sensations of motion. Nothing had any effect on my symptoms. my head still feels like a lead weight and I dont know how much longer I can go on like this before I freak the f out. Finally doc circles back around and asks about tiredness again. Says he feels like there could be an issue there even though I feel like my sleep is normal. He orders a at home sleep test and it comes back positive for moderate apnea. Of course, being an at home study it didn't give a lot of detail other than confirming I definitely had apnea. We decide to start treatment with a RESMED AIRSENSE 10 AUTOSET. My insurance has a high deductible so I've been paying for most of this out of my own pocket. I got online and ordered the machine and supplies. Over the couple of days while the machine was in the mail I did quite a bit of research on here and got my hopes up because it seems that most of my symptoms could be caused by my mind and body running on fumes for so long due to lack of real sleep. Maybe I'm close to actually feeling normal again!
I get the machine, hook it up the first night, decide to leave the parameters set on "auto", and I go to bed hopeful with my fingers crossed.
I do remember waking up a couple of times and having to adjust the mask, but other than that, everything was unremarkable and felt pretty much like a normal nights sleep for me. As soon as I woke up the next morning i could tell that I felt just as crappy as any other morning. Tired, not rested, hung over feeling, like my head and body were submersed in something "thick". Like every other recent morning. I felt like crying. My GF woke up and asked how it went and I tried to hide my disappointment by saying I probably needed some time to get used to it, but I felt no better.
Then the scary part. I decided to check the sleep report on the machine. AHI of 42 with 39 centrals! That's bad, right? So after freaking out I calm down and decide I need more data so I start tweaking settings and sleep a couple more nights to see if anything changes. No matter what parameters I change I consistently get between 30-40 events per hour and almost all of them register as central. I got on here friday and researched all night (my body apparently doesnt sleep anyway so why not) and realized that if those numbers are accurate then thats not ok. I can't get ahold of my doc being the weekend, and in a panic was very close to just ordering an AIRCURVE 10ASV just to see what happened to avoid waiting for more tests. I held off because I know I should probably have a real sleep test and talk to my doc, but if I am going to end up buying an expensive ASV anyway then I'd rather do it sooner rather than later to save as much time and money and suffering as I can. The thought of having to wait weeks or months for relief makes me want to bang my head against a wall. I went on a hard 3 mile run this morning in a defiant rage even though I am out of shape from months of doing nothing just to "punish" my body. Pretty sure I'll have some sort of breakdown if I have to wait months more before getting sleep. Shower me with your wisdom! What should my next step be?

Welcome TheMacGyver, sounds like you have come to the right place! You also may be onto something in that you MIGHT need a different machine, or just need to tweak the settings. Have you downloaded the Clinician's Manual yet? It is available from this forum. You need to go up to the top and click on CPAP Setup Manuals and follow the instructions.

Xpap therapy won't cure you overnight either. Hopefully soon, someone much more knowledgeable than I will chime in with some good advice for you.

Best of luck!

APNEABOARD - A great place to be if you're a hosehead!!

-------------------------------------------------------------------------------------------------EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!

Thank you Cate1898! I did actually get the clinical menu and instructions. I didn't do much besides raise minimum pressure and lower maximum. The last couple of nights it seems to automatically keep me at about 9-11 which makes sense because id isnt detecting obstructions. I'm sure there is much more that I can try but as Im sure many here know, its hard to be patient when you feel like crap. Also, I tried to use the sleepyhead software but it looks like my computer is too old. Does anyone know of software that will run on an older mac or an app that will work with tablet or phone? Thanks again.

It sounds like you have treatment-emergent apnea. Most cases will settle down within a month or so. I went through the same issue about a year ago.
Try not to worry.
Sleepyhead is your best bet, do you know someone with a newer computer?

Do you have a copy of your at home sleep test results? I just had one done, and it has a fair amount of detail. It should show you the relative amounts of central vs obstructive sleep apnea that you have. If central apneas were going to be a big problem I would have expected it to show up on the sleep test.

You really need to get your data checked in SleepyHead. You may want to post your software problem in the software support forum here. They may be able to help you some.

If worst comes to worst perhaps find a friend with a newer computer to download it and look at the data. It is on the SD card in your AirSense 10 machine. You need to establish whether or not all of those central events are real or false flags. SleepyHead is the way to do that.

The AirSense 10 has the capability to do a wireless transfer of data back to the provider of the machine. They could potentially look at your data to help you understand it.

Thank you guys for all the replies. I just don’t use a computer anymore and the one I have is over 15 years old and can’t be updated due to the ancient processor lol. I will get my sleep study results tomorrow from the doctor and borrow someone’s laptop long enough to get you guys some data. You guys are helping me already. I just need to calm down and take it a step at a time.

(04-15-2018, 04:17 PM)TheMacGyver Wrote: Thank you guys for all the replies. I just don’t use a computer anymore and the one I have is over 15 years old and can’t be updated due to the ancient processor lol. I will get my sleep study results tomorrow from the doctor and borrow someone’s laptop long enough to get you guys some data. You guys are helping me already. I just need to calm down and take it a step at a time.

Yes, you need to find out where you stand with apnea before you even think about another machine. If you get detailed results the most important factor will be the ratio of central apnea to obstructive apnea.

Your experience seems similar to mine in some ways. I was gradually getting more tired each: day, week, month.

But since I don't have a companion, it took till my apnea situation got extremely bad. I had to get a sleep study to verify just how bad it was. I was also getting extensive heart tests at the same time BTW.

Some shortening: I eventually ended up with an ASV machine due to mixed apnea. Do you end up on ASV? Not sure yet. Certainly it's not for everyone, but for those that do need it, ASV will work amazing things. Keep us posted.

Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice. Even a 1,000 mile trip requires a good first step. My recommended first steps include getting good walking shoes, 1 great cup of coffee, and a good GPS.

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.